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Very Interesting Scoliosis Blog

This morning whiule searching for information about the Charleston Brace in response to a question from the fellow on the bracing forum, I came across an interesting Blog.

I did a search and I see I am not the first to have brought it to folks attantion, Chris WBS mentioned it about a year and a half ago.

This surgeon keeps a very active Blog, (over 300 posts in the last 2 years). Obviously I havent read all of it but the first post I came across was interestingnatural history of adolescent scoliosis where he talks about some of the research on the topic.

His main blog page is http://drlloydhey.blogspot.com/
You might consider bookmarking it.
and if anyone reads something particularly interesting perhaps you can bring it to folks attention and we can discuss it on this thread.

In this chapter they also report from Univ Iowa study that thoracic curves more than 30 degrees at maturity progressed an average of 19 degrees during the 40 yr f/u period, with the fastest progression being in the curves that were 50-75 degrees at time of maturity, which progressed 0.75 to 1 degree per year (40 degrees over 40 yrs).

Based on this, I think I misunderstood our surgeon... I thought I understood him to say only 5% of curves <50* at maturity will ever progress in a lifetime. I now suspect what he actually said/meant was that only 5% of curves <50* progress to surgical territory but most/all still can be expected to progress continuously though life.

That is a sticky wicket in my opinion. The people in that group progressed an AVERAGE of 19 degrees in 40 years. And it is likely the ones who progressed more than the average had larger curves. So my daughter is at 36* - 40* and will soon be in Stage 8 (mature). So she is likely to progress at least the average amount, 19 degrees in 40 years. That puts her at 56* - 60* at 70 years old. That's still a significant curve that likely will trigger surgery for pain and other spinal damage when she is older. I think this group is unfortunately in a very gray area.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

That has piqued my curiosity as well. One of the surgeons I saw in Chicago who proposed a really big surgery for me is just the opposite. I think he holds the record for the slowest fusions. I’ve had conversations with women treated by this doctor who were in surgery anywhere from 17 to 30 hours. The 30-hour one was split in two 15-hour segments, but why so long? And when I was in rehab I met a woman who had surgery by this doctor in one 19-hour operation. I seriously question the safety of having a patient anesthetized for so long.

That has piqued my curiosity as well. One of the surgeons I saw in Chicago who proposed a really big surgery for me is just the opposite. I think he holds the record for the slowest fusions. I’ve had conversations with women treated by this doctor who were in surgery anywhere from 17 to 30 hours. The 30-hour one was split in two 15-hour segments, but why so long? And when I was in rehab I met a woman who had surgery by this doctor in one 19-hour operation. I seriously question the safety of having a patient anesthetized for so long.

Yikes! I'd have to agree with that. Having undergone 11-1/2 hours, I can't even imagine what the patient would feel like after twice that amount of time. Chris, PM me with the name if you don't mind.

This morning whiule searching for information about the Charleston Brace in response to a question from the fellow on the bracing forum, I came across an interesting Blog.

I did a search and I see I am not the first to have brought it to folks attantion, Chris WBS mentioned it about a year and a half ago.

This surgeon keeps a very active Blog, (over 300 posts in the last 2 years). Obviously I havent read all of it but the first post I came across was interestingnatural history of adolescent scoliosis where he talks about some of the research on the topic.

His main blog page is http://drlloydhey.blogspot.com/
You might consider bookmarking it.
and if anyone reads something particularly interesting perhaps you can bring it to folks attention and we can discuss it on this thread.

That's a really good synopsis of the current thinking on bracing. I worry, however, because of some of the wording, that it's being used to coerce people into surgery. There's no way of knowing if that's the case, however, unless one could be there when Dr. Hey is presenting the info to the patient and his/her parents.

That's a really good synopsis of the current thinking on bracing. I worry, however, because of some of the wording, that it's being used to coerce people into surgery. There's no way of knowing if that's the case, however, unless one could be there when Dr. Hey is presenting the info to the patient and his/her parents.

Can I ask which passage you thought could be construed as coercing people into surgery?

I am very skeptical of this surgery coercion argument. The good surgeons have their dance card full at all times. They don't need to resort to coercion.

Sharon, mother of identical twin girls with scoliosis

No island of sanity.

Question: What do you call alternative medicine that works?Answer: Medicine

That's true, Sharon. If you needed to book surgery with a well-regarded, top-notch surgeon, you could be looking at 6-12 months waiting time, maybe more. They do seem to have more than enough work - that's for sure.

While all the statements are true, I thought this segment said to the reader, "if you're smart, you'll choose potential surgery over that awful bracing." In Dr. Hey's defense, I think it's difficult for most surgeons (who one would assume would rather operate than monitor a kid in a brace), to be completely neutral.

In addition, it is important for the child and family to realize the following:

1. In order for the brace to be effective, it must usually be worn from 16-23 hours per day.
2. Compliance can often be an issue, and can create tension between child and parents.
3. The brace must be worn until skeletal growth is completed, which could be 2-6 or so years in most cases.
4. There may be some psychological / self-image issues around brace wear that could effect the child’s development.
5. There is no guarantee that the brace will work. Scoliosis surgery may still be necessary as an older adolescent, young adult or older adult. Some adolescents feel “cheated” if they choose the bracing option, and then end up needing surgery anyway. I have had college students weeping wildly in my office, who were treated for years in a brace through middle school and high school who then found out that they needed scoliosis surgery anyway.
6. The braces can be very expensive (often over $2,000 - $5,000) from most orthotists, although usually covered at least in part by insurance.
7. Bracing usually multiple trips to orthotist for adjustments, and possibly new braces required as the child grows.
8. Additional X-Rays needed in the brace to judge the effectiveness of the brace on curve correction.
9. Bracing does not improve the appearance of the deformity, or the end curve measurement — the hope is to hold the curve at or near the current measurement. Self-image issues have been shown to be a major factor in the long-term effect of scoliosis on the individual.
10. Scoliosis surgery has changed a lot during the past 40 years, with excellent improvements in postural appearance, much shorter surgical times, hospitalizations, and recovery times, and lower complication rates.
11. Bracing may be helpful to at least delay surgery until a child is bigger, and has had more axial growth, making surgery less risky. However, this has to be weighed against the potential for severe curve progression despite brace.
12. Other factors may affect the child/adolescent’s ability to be successfully braced, including body habitus and curve flexibility and location.

Dingo, that's for AIS

Dingo,

I believe that figure you quote for male: female risk ratio of 1:10 is for AIS. The studies I have read for JIS put the figure at about 50/50 male/female, with more males in the 3-6 y/o age group and more females in the 7-9 y/o age group. The thinking behind this is that the younger JIS cases may contain some hold-overs from infantile idiopathic scoliosis (previously undetected cases). At least that is what I've read.

It may be totally irrational, but I just have a funny feeling about surgeons who self-promote. Dr. Hey's blog is perhaps more informational than promotional (he obviously loves/lives and breathes his work), but it still smacks faintly of "hard sell" to me.

That being said, I'd probably seriously consider going to the guy if I needed revision surgery and Dr. B had retired. He appears to get very good results.